Hey Everyone... Dustin here, and I am full of emotion as I begin to write an update from my point of view on everything Madison since my last post. Much has happened since my last post, and I am so glad that Mandy took the time to post an update introducing you all to Madison. I have really struggled with want I want to say here, and that is why I titled this post as "No Words." I am going to do my best to write about our experiences, which include dreadful lows and heavenly highs. For this reason, I probably won't be able to find the words to completely recall everything that has happened to our family over the past couple of weeks. However, I promise you all that I will do my best. Remember, this story is about a little miracle and her Father... our Heavenly Father!
Before we had Madison, people told us a few "nuggets of truth" to prepare ourselves. These were things such as (1) we will never sleep again, (2) it will take twice as long to do everything from this point forward except showering which will only take half as long, and (3) we will never love anything or anyone as much as sweet Madison ever again! I will have to agree that everyone was right, but we still didn't understand! A month later, I am happy to announce on behalf of mommy and daddy Rawls, we get it!
Looking back, the week after we arrived home from VUMC was a blur! I don't know what we would have done if Mandy's mom Denise didn't stay with us for the week. Plus, Mandy's dad Vann came in both weekends and took care of all the chores around the house. Because of Madison's Spina Bifida, she has to be fed and cathed (inserting a catheter so that excess urine can be drained) around the clock. Slowly but surely, those three hour shifts began to take over. I honestly remember thinking at one point that I didn't know what day it was, nor did I really care. She is a special little girl, and she will require special attention. Mandy and I are so blessed and appreciative of the time and sacrifice Vann and Denise gave us that week. They were a perfect example of God's Love!
We spent the following week at home, watching Madison grow and visiting her pediatrician every other day. While we were home, we got another ultra sound scan on Madison's head done at Cookeville Regional Medical Center. We brought those results with us when we returned to see Dr. Tulipan for our two week follow up appointment. He reviewed the scans, and even though he felt her ventricles were slightly increased, he sent us home for four weeks before our next appointment. Mandy and I left Nashville so excited, and we only had to wait in Cookeville for a few short days before returning back to Nashville to celebrate the Fourth of July holiday with many of our family and friends who had yet to meet Madison. Mandy and I rode high the rest of the week knowing that Madison had avoided shunt surgery once again...
...then Friday July 2 came!
We woke up early on the second to get to my parent's house so that we could go swimming that day. After we arrived there, we noticed that the incision site around Madison's surgery was beginning to swell. We honestly didn't think much about it at the time, because Madison had been quite active the week before and we thought she may have just over done it a bit. Mandy and I visited with my niece and nephew for a good while that afternoon and re-examined the site once we arrived at my parents. It had continued to swell, and our anxieties began to do the same. We monitored Madison the rest of the night, and by nights end, the site had swollen to double its size. Madison wasn't showing any discomfort to the touch, nor was she feverish, irritable, lethargic, and the site looked fine. We were worried, but the site nor Madison herself showed any signs that anything serious was wrong. So, we kept our regular routine and headed to sleep to get ready for our family's July Fourth celebration the following day (on the third).
The swelling continued during the night. As we already mentioned, Madison didn't appear to be bothered by it, nor did it present any textbook signs of things that would worry us. We let her take it easy the rest of the day, and we still decided to go to my brothers to enjoy the fireworks and festivities. We let a few people hold Madison for a little while, but we decided that being passed around probably wasn't in her best interest. So, my brother and sister-in-law offered to lay Madison in the middle of their bed with her bumpers so that she could rest. We did that, but by the end of the night, her incision had swollen to about triple in size. We were extremely worried at this point! Three of our cousins are nurses, and they came to look at it and felt that our assessments we mentioned earlier held true. On a side note, the two biggest hits of the party were my brother's fireworks display and of course sweet Madison. I will have to give my brother and sister some credit here... Each July 5th, they go out and buy a load of serious fireworks to hang on for an entire year. That saves them cash, but it also helps put on a sweet back yard show in the sky.
After arriving back at my parent's house the night of the third, Mandy and I were consumed with worry at that point. There was just something about this that didn't set well with us, especially me. I was wiggin' out because of the swelling at the base of her spine, because I had just gone through something that was eerily familiar. When I had back surgery at the end of April, something went terribly wrong within the next few days. We learned that I tore a whole in my dural sac and began to leak spinal fluid that pooled at the base of my spine... the same place as Madison's swelling. Naturally, I immediately jumped to the worst conclusion that this is what was happening to Madison. The difference with me, is that my spinal fluid actually burst through the incision site because I still had staples in and the skin was weak. Madison's site had healed up quite well, and there didn't appear to be a weak spot for the fluid to drain from. Long story short, neither of us sleep well that night, and we decided to call VUMC's on-call neurosurgeon first thing the following morning!
Happy Fourth of July!!! Our day began with a run of the mill phone call to a neurosurgeon. We explained to him Madison's Spina Bifidia and all the symptoms we saw at her site... He proceeded to run us down the checklist I referenced earlier... (1) Is the site red?, (2) Is the site hot to the touch?, (3) Is she running a fever?, (4) Is the site leaking?, (5) Has she had an extreme change in behavior (lethargy or irritability)?, or (6) Is she vomiting? Once we had answered negatively to all the questions, the on-call physician didn't appear to consider the situation serious and called it "non-emergent." As soon as we hung up the phone, Mandy asked me if I felt any better, and I immediately responded NOPE! So, we changed our actual July 4th plans and just stayed at my parents house all day so that Madison could rest. We began packing things that evening for a return trip to Cookeville the following day, still feeling uneasy about the swelling. Monday came early, the day we were supposed to return to Cookeville and the day most businesses were recognizing the Fourth Holiday. We changed our minds and decided to stay in Nashville at my parents house so that we could actually call Dr. Tulipan the following morning just to double check everything.
That is what we did, and that is when the week got flipped on itself!
Mandy spoke with Dr. Tulipan's nurse practitioner. She said that if we still had that strong of feelings that something wasn't right, it would be better and quicker to bring Madison to the ER for ultra sound scans so that we could really get a clear picture of what was going on in her little body. We arrived at the VUMC ER about 10:00 am Tuesday morning July 6. We made sure to feed Madison at 9:00 earlier that morning just in case we might be there for a while. That was a smart decision!!! After we got there, and the doctors saw the first set of scans, they told us we couldn't feed Madison any lunch until told otherwise. In hind sight, that was pretty strong foreshadowing. After the second set of scans, and Madison well behind her noon lunch, our fears were confirmed as one of Dr. Tulipan's residents came in to explain everything to us. The swelling was indeed a build up a spinal fluid. Her brain was producing too much fluid for her body to reabsorb at the normal rate. The extra fluid found a weak spot at her incision site and began to collect just under her skin. The doctor informed us there that the shunt surgery we had been hoping and praying to avoid for so long was no longer unavoidable. He originally scheduled us to return Friday for the surgery and then returned to our ER room within five minutes to tell us that he had a opening in the schedule for the next day and wanted to go ahead and push Madison's surgery in there. He reassured us the only reason for this was because a slot had opened up and he wanted to avoid a CSF leak that had collected at her incision site. That would have been Bad News Bears - Walter Matthau!
Mandy and I returned to my parents house a little shell shocked, but relieved to know that our parental instincts were confirmed and also concerned because our little angel was going in for her second major surgery just four weeks into a troubled start in this world! Mandy and I tried to take it easy the rest of the day, and we both tried to sleep the night before her surgery, but that just didn't happen!!!
I really don't think we were prepared for what the following day was going to give us!
We were instructed to be at the surgery check-in at 7:00 am for an 8:30 surgery. So, 5:30 am came early after going to sleep just two hours earlier. Shortly after arriving to check in for the surgery, we quickly learned there were some issues regarding the scheduling because the pre-registration agent told us she had Madison's surgery written down for Friday. We explained to her that it was originally scheduled for Friday, but the resident wanted to bump it up because of the surgical opening and the concern to do everything to avoid that sac of CSF (Cerebral Spinal Fluid) from leaking. To complicate things, the scheduling nurse we spoke to who informed us to be there at 7:0o also told us that we could not feed our infant daughter anything after Midnight the previous evening. Needless to say, neither of us slept much just to keep our daughter pacified so that she couldn't/wouldn't think about how hungry she was feeling. Well, 8:30 am came and went, and we learned that we had been bumped back to a 1:00 pm surgery, so at least we could feed Madison a full bottle at 9:00 am. We also learned that we could have fed her throughout the night as long as she had nothing at least four hours prior to the procedure. Since Madison is taking breast milk only, she metabolizes it much faster than formula, so doctors are okay with the four hour feeding time window. Somebody must have skipped that lesson in nursing school! We were not happy!!!!!
We fed her, and she immediately crashed from being satisfied and so worked up for so long. As 1:00 began to approach, we were visited by yet another nursing assistant who told us that the surgery had been bumped back to 3:30 (which we later found out was the actually time set from the beginning), and that we could feed Madison some Pedialite, as long as she had it finished by 1:30. We started the Pedialite at 1:00, and she was finished by 1:04!!!
They finally took Madison back that afternoon for her surgery. We met with all the doctors and nurses who were going to be in the room with Madison for the surgery. They told us that it would take longer to prep her for the procedure than to actually perform the surgery. After praying over her, and many tears, they wheeled her back at 3:30 sharp. The nurse we met said she would call the waiting room to inform us when the surgery had started. That call came at 3:39. Then we immediately received another call at 3:46 that the surgery was done, and that sent chills down our spine. The Nursing scheduler on call assured us that nothing had gone wrong. It was just a combination of a very fast surgical procedure and the fact that the OR nurse didn't exactly call us as soon as Dr. Tulipan began the procedure. We were shuffled off to a waiting room to meet Dr. Tulipan. He told us the surgery went according to textbook, and he was very happy with everything. We asked more questions, and each answer he offered reduced our anxiety level. After he left us, we felt really good about the surgery and were hopeful everything was behind us. We returned to the waiting room until another set of nurses said we could come to Madison in the post-op recovery room. That took a while to happen, so I will be honest when saying that our anxieties began to creep back up!
Nothing, and I mean nothing, could have prepared us for what we saw once we got to Madison in her recovery room. When I spoke of no words earlier, this is where that sentiment truly comes into play. When we were about ten feet away from her recovery room, we heard this cry that sounded like it was coming from a grown male dog. The intubation tube had extremely irritated Madison's larynx and sphayrnx (throat), and that poor girl was so hoarse!!! Long story short to start out, Madison didn't due well with the anesthesia from the surgery. The surgery itself went great, but we had some significant problems to do the anesthesia. Madison was pale as a ghost, and she was apparently in severe pain from the surgery. Tulipan's resident said he wasn't a real big believer in pain medicine, especially in patients that just had brain surgery. I understood his perspective, but after thirty minutes of these cries I have never heard before, we began having the nurses page people to get back down there. In a matter of sixty minutes, we left Dr. Tulipan on cloud nine after he informed us of the success of the procedure and entered Dante's ninth level of hell seeing our sweet little girl in that condition. WE WERE SHELL SHOCKED!!! Madison could not be moved or touched without screaming out in a cry that made our heart hurt. We quickly followed up with some doctors who prescribed her some pain meds, but she was so far behind the pain... it was not a good situation.
We were in the Post-Op recovery room until 6:45 pm from a 3:30-3:45 surgery. Madison's body wasn't responding well to the anesthesia nor pain medicine. They wanted to move Madison to her hospital room so that she could get hooked up to the monitors and have the resident on the floor right there to observe her vitals which were all over the place. After we got her settled and started her first set of vitals, it was clear that we were probably going to have a tough road ahead of us. Her heart rate was hovering somewhere between 180-200 bbm, and her initial blood pressure was 130/73. That is the blood pressure of a a fully grown, healthy adult. The nurses and docs didn't like that, so we doubled our efforts in monitoring her. To make things worse, she was in so much pain, whenever the pain would catch her off guard, she was take deep gasps of air and hold her breath for quite some time. That act alone basically rendered the machine recording her vital signs useless!!! We brought more doctors in to observe and assist. Shortly, we all came to the quick conclusion that Madison was just feeling more pain from the surgery compared to other babies. She needed pain medicine, stronger pain medicine, and quickly so that we could get the situation under control. This process began at about 8:00 pm and lasted until 5:00 am, which effectively lead to the longest, hardest night of my life.
I conned Mandy into going to bed to sleep so that she would be able to pump breast milk the next day. She learned of my conniving ways early in the morning, and she wasn't happy with me because I promised I would share the bed with her at some point in time so that I could sleep too. We had enough at about 4:00, and I told our nurse to page someone from neurosurgery to get over here to give us some options. I cannot remember her name, but neuro doc on-call agreed with our pain assessments and decided to prescribe Madison a baby dose of Morphine, and looking back, that is were we finally turned the corner. Up until that point, I have never felt stress nor cried tears like that in my life. We experienced a pain that I honestly say ripped a part of our being out and left it in that hospital room. Madison screamed all night, and there was absolutely nothing we could do for her to either make it right or take it from her! Seeing her that way made me yearn to be in Heaven where there will be no tears or pain!!! Someday, Madison will rise without scars, shunts, and tubes in and on her little body!! Someday, I won't be reminded of the horror of that night when I look at her scars!!! Someday, we will rest in Heavenly bliss with Jesus in Heaven with glorified and flawless bodies!!!! I cannot wait for that day!
To get back on track, the morphine finally helped Madison get ahead of the pain and she finally fell asleep around 5:00 am for the first time, and mom and dad were quick to follow. The resident neuro-surgery physician that assisted Dr. Tulipan in the surgery stopped by about 7:00, but I honestly can't remember what I said to him and Mandy doesn't remember him even stopping by the room. He double checked the scar, said everything looked good, and reassured us we would be going home that day. We weren't convinced!
After her morphine dose, we continued her tylenol/codeine regimen every four hours from that point forward. That has made all the difference. Before 5:00 am, that wasn't our daughter. That was some broken version of Madison occupying that little body... she wasn't the same. The doctor reassured us that this will all pass, and we just needed to trust him. We tried our best to believe him and have faith in the Great Physician!! To our amazement, starting at around 10:00 am, Madison finally began to make significant strides. So much so, we asked to speak with Dr. Tulipan's nurse practitioner to lay out our criteria needed in order for us to be comfortable taking Madison home that afternoon. Besides the run of the mill concerns, we told her we would only leave the hospital if we had a five day prescription of the same Tylenol w/codeine script they were using in the hospital room. This way, we knew that we could keep Madison comfortable at home! She agreed, and the table was set to return to my parent's house and have the previous day and night from hell behind us! I think I aged five years in that one night, and I can honestly say that if there was any way that I could have put myself her in place, and I begged the Lord for that, I would have done it!
We left the hospital Thursday afternoon to return to my parent's house, but my mom had conditions if we were going to return there... She was going to send us to bed and take care of Madison's feedings, changings, and cathings all night long so that we could sleep. Well, she didn't have to twist our arms, and I think Mandy and I slept somewhere between 13-15 hours a piece that night. What was awesome, my mom did the same thing for us the following night, not to mention my aunt and sister-in-law who came over to take up many more "Madison shifts." They all really rallied around us for a few days, so that Mandy and I could rest and recapture our senses. I sincerely appreciate my aunt and sister-in-law for helping us out over this past weekend, but I would be a terrible son if I didn't emphasize here just how much my mom took over for us so that Mandy and I could hit the reset buttons on our mental and physical health. Each of you was a life saver, and I honestly don't know what we would have down without all of your help!!!!! You all showed us a perfect example of God's love in the family, and we love you very much!!!!!
You know, that really just about wraps it up. We returned home to Cookeville on Saturday night July 10. Mandy and I desperately needed to go grocery shopping, so once again my parents came to the rescue. They decided to take a bike ride up to Cookeville on Sunday the 11th and baby sit Madison for a few hours so that Mandy and I could go to Sam's and Walmart. I cannot believe they did that after everything else they had done for us over the previous few days. I am sure they didn't mind the snuggling perk that came along with the coming up, but still... That is pretty awesome huh?
Mandy, Madison, and I are home and hopefully for good!
***Funny Story of the Post***
Up to this point, this up update has been pretty serious, but you all know that I can't possibly put a post up without adding a little something that we think it really funny!!!
On the morning of Madison's shunt surgery, we woke up at the crack of dawn in order to make it to VUMC by 7:00 am. I got completely ready at the house except for shaving. I grabbed my electric razor before getting in the car, so that I could shave on the ride down. I checked it, and it had plenty of battery charge, so we headed out. As soon as I turned out of the driveway, I turned the razor on and began working on my right cheek. By the time we arrived at the stop sign at the end of the street, my razor had died. Apparently, after not using it for a month or so, the battery charge indicated on the front didn't quite match up with the true battery life that existed inside the machine. So, for visual aid... only the right side of my face was shaven - ALL DAY LONG. This was almost like the preppy mullet: all business on the right cheek, and all party on the left cheek!!!! It was really funny to look at, because the left cheek was definitely quite a bit more hairy than just stubble. Mandy and I had nice laugh with that all day, and it sure did help cut the tension here and there throughout the day (which might be why it happened to begin with). I hope you had a little laugh, because we sure did!
Praises in this update!
Madison's shunt surgery was truly successful even with all the drama!
Both set's of our parents really went out of their way to help us during the last few weeks, not to mention other family members that have helped care for Madison so that mom and dad could have a break!
We are back at our home in Cookeville, which always means we are more comfortable!
Mandy's best friend Amanda is on her way here to visit today, and I know Mandy is thrilled to be able to spend a week with her best friend.
Matt and Elisa Bragga came and mowed our grass for us while we were at VUMC, and that truly blessed us!
We have had enough finances come in to cover many of special costs associated with all of the medical and living expenses over the past few months. Without God working this out, I really don't know how we would have made it!
Ever since Madison's shunt surgery, she appears to be more alert, better able to track movements, stays awake longer, and just shows overall neurological and cognitive improvements.
God truly has shown us His hand of Mercy and Strength through this whole process, and He has already forgiven me for my doubting and faithless moments.
Mandy is recovering well and is the perfect mom for sweet Madison!
Prayer Requests for this Update:Madison's overall continued improvement, surgical healing, and weight gain.
Mom and Dad's rest and strength!
Wisdom for Mom and Dad regarding the many and varied decisions that must be made for sweet Madison.
During the past month, it has become clear that Madison is going to require specialized care that most likely will be above and beyond the standard care any day care in Cookeville will provide. Mandy has the desire to stay at home, and I support her in that desire. However, financially we cannot make that happen under our current circumstances and salaries. Please pray God works a miracle somewhere that will allow her to stay home so that He receives all the praise!
NO MORE SURGERIES!
Well, I believe this is all I have for this time. As usual, I apologize for the length of the update, but as "they" say... it's all I got!
be blessed, be safe, and be loved!
Dustin
Brother Joel Wood dedicating Madison. He said the verse that came to mind when he thought about Madison and her miraculous story is Romans 8:37 "For we are more than conquerors, through Christ who loves us so."
Daddy, Mommy, and Madison
The whole family! (from left to right) Uncle Stacy & Aunt Marilyn, Mayci, Granddaddy T, Nana & Granddaddy, Daddy, Mommy, & Madison, Grammy & Granddaddy, Dalton, and Aunt Diane. To sum up...a whole bunch of people who love Madison and have prayed for her for so long.
